Sudden Unexpected Death in Epilepsy (SUDEP)

In rare instances, children and youth with epilepsy (CYE) pass away suddenly without a clear cause of death. When a child or adolescent with epilepsy dies, and their death is not caused by another illness or injury, this is called Sudden Unexpected Death in Epilepsy (SUDEP). Research suggests that 1 in 3,000 CYE will die of SUDEP annually, and rates are higher among nonwhite children.

What causes SUDEP?

While the causes of SUDEP are unclear, experts know that it is most likely to happen during or immediately after a seizure. During a seizure, children or youth may stop breathing or have an irregular heartbeat. All these factors may contribute to SUDEP.

Children and adolescents are at higher risk for SUDEP if they:

• Have seizures often or their seizures are not under control.
• Have convulsive seizures (also called tonic clonic seizures). Learn more about the different types of seizures.
• Miss doses of seizure medicine. It is very important to take seizure medicine as directed by a physician. Learn more about medicines to treat epilepsy.
• Have seizures at night.
• Have a developmental disability (like autism spectrum disorder or cerebral palsy). Learn more about other health conditions related to epilepsy.

How can families/caregivers prevent SUDEP?

Keeping seizures under control is the key to keeping children and youth healthy, safe, and to reduce the risk of SUDEP. Physicians can share the following tips with families/caregivers to help lower their child’s risk of SUDEP by:

• Making sure the child or adolescent takes seizure medicine as directed by their physician.
• Checking in with the child or adolescent’s physician regularly and following their instructions.
• Asking the physician about wearable devices to help detect seizures, and whether these might be an option for the child/adolescent.
• Taking steps to keep seizures under control — like monitoring seizures, making a seizure action plan, and learning seizure first aid. Learn more about ways to manage seizures.
• Helping the child or adolescent build healthy habits like getting enough sleep, managing stress and participating in physical activities they enjoy.

Additional Resources

For more details, check out these helpful resources:

• HealthyChildren.org: Why It Matters to Talk About Sudden Unexpected Death in Epilepsy
• Danny Did Foundation: About SUDEP
• CDC.gov: Sudden Unexpected Death in Epilepsy (SUDEP)
• Epilepsy Foundation: SUDEP
• Preventing Epilepsy Deaths: Clinician Toolkit